Not surprisingly a lot of things run through you mind when you are sick.
When you really feel rotten the thoughts have a tendency to challenge my self-perception and my identity. As soon as I feel better the racing thoughts disappear, but when my MS is really at it, I usually reach a point where the insecurities set in.
It means a lot (actually more than a lot) for me to be a researcher and to conduct relevant research. When I am completely exhausted – what Mathias and I refer to as cement-exhausted and the hospital as extreme fatigue – I become terrified that I can no longer “keep up” and conduct good and interesting research. The thoughts are racing through my mind: what if the energy never returns? What if the MS is going to impact my cognitive abilities? That is what I fear the most, because then it would be difficult to be a researcher. After an extended period of time with extreme fatigue I can almost convince myself that I am being affected cognitively – because I cannot do anything about the fatigue. So far I have been lucky and the energy has returned and the insecurities disappeared. But while it is going on the insecurities – that are otherwise just a normal part of being a researcher and being judged for your work constantly – is not very healthy because they become attached to my self-perception.
All of this is obviously also connected to the way in which my illness impacts Mathias. He is amazing and he is always there for me. But nevertheless I worry about how much it impacts him. I had to answer a questionnaire from the MS hospital and one of the questions that must be rated was: “Due to my physical condition I find it difficult to tend to my family’s/closets’ needs”. It made it really concrete that not being able to tend to your partner’s needs is a normal part of being sick – wetter it is about cooking dinner or just having the energy to listen. Luckily Mathias an I have our own quirky routines and we always make everyday life work, but sometimes it becomes a part of the racing thought that Mathias really don’t deserve having to deal with this shitty disease.
I am not in a constant fear of being insufficient – certainly not! When I am feeling okay all of this is not a problem at all. I am just trying to describe that when the fatigue and pain are extreme and feel like they intend to continue forever it is difficult not to be challenged on your self-perception. Luckily, I come with a certain core-happiness that ensures that the racing thought never get a hold on me.